A Life Hidden – the First Year

A Life Hidden is a year old this week. This milestone is an opportunity to look back on the year that has passed, and also to thank everyone who has supported my writing during this time.

On a personal level it has been a difficult year. Shortly after launching the site, I suffered a relapse and close bereavement, the impact of which prevented me from writing for a number of months.

Nonetheless, the response to A Life Hidden has been exceptional, with well over 10,500 unique visitors in this first year. I have received many wonderful comments from people around the world who have found the site helpful. It means a great deal to know that my writing has touched so many.

I had to make the difficult decision to turn off commenting under my posts here, but feedback is very welcome and I am grateful to everyone who has contacted me through social media and email. I am always open to suggestions and constructive criticism too.

To mark the first anniversary of A Life Hidden, I have compiled quotes from some of the most popular and notable pieces of the year. If this is your first visit here, do have a look around. There are many other articles besides those summarised below.

The Power Of Listening was the most read article on A Life Hidden this year. Originally written in 2016 for a training seminar for junior doctors, it has been shared widely on Twitter. Several doctors and health councils have promoted it, including GP and MP Dr Paul Williams, who wrote:

“I hope that everyone who works in healthcare, who might ever care for someone who has ME/CFS, gets to read this.”

The beginning of the article tells doctors:

“The ability to listen is one of the most powerful tools you have at your disposal.”

It goes on to describe my experiences with the medical profession.

“I have encountered doctors who have reduced me to tears with their rudeness; others who have been so abusive that the damage remains with me decades later. No one should be treated this way, let alone when ill and vulnerable.”

“On so many occasions, my voice has been ignored by professionals convinced that anything I had to say was irrelevant, because they knew better. My opinions and views were invalid, for no reason other than that I was the one expressing them. As the patient, I couldn’t possibly know anything about myself or my health.”

The article recounts one occasion in hospital when my needs were heard and understood.

“In short, I was treated with respect and compassion. In an ideal world this would not be something to remark upon, but given my past experiences it was a source of surprise and relief.”

The Power of Listening discusses the fact that ME is often still dismissed as a psychological condition.

“Many of the illnesses unquestioningly accepted by medicine today were historically viewed with suspicion. There will always be limitations to the tests that can be performed and the abnormalities that can be demonstrated in a clinical setting. None of this should have any impact on the care and respect afforded to a patient. A person’s lab results should not be their route to a doctor’s basic courtesy.”

The article ends with some final thoughts of the importance of listening.

“When a patient’s perspective is viewed as invalid, compassion becomes an early casualty. Accuracy is also compromised: when you cease to listen to the one person experiencing the illness you are attempting to treat, terrible mistakes can and will be made.”

“The experience of being listened to can transform a patient’s life. It can be the difference between suffering being alleviated and pointlessly exacerbated. It is not an exaggeration to say that it can be the difference between life and death.”

To mark severe ME awareness day in August, I shared a piece by my close friend Emily Collingridge, written a year before her death in 2012. Emily’s Appeal was the most shared post this year, with over 1000 Facebook shares in just a couple of days. (Unfortunately such data is no longer available from Twitter.)

In a piece painstakingly typed out over many months, Emily described the intense suffering that dominated her life.

“My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now – it’s like that every single day.”

“My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering.”

Emily’s symptoms were typical of very severe ME, and her descriptions resonated with many.

“I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music – the list is long. ME has made my body an agonising prison.”

“I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.”

Emily ended with powerful words which are as relevant today as they were when she wrote them nearly 10 years ago:

“This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.”

Many people responded to this piece, in which I wrote of the “indescribable joy of experiencing the outside world after many months or years of incarceration.”

I added: “There is joy in this rediscovery, but there can also be grief. For it is perhaps only in glimpsing the world again that one truly knows the deprivation of being shut away from it.”

I described the conflicting emotions that improvement can bring.

“At times I’ve felt myself suspended between elation at discovering a simple pleasure, and despair at the reminder of just how much normality has been denied me.”

I wrote of how it felt to see the sea again, after many years when I thought I never would.

“On the relatively rare occasions that I see an open landscape, my mind is overawed by its scale. I am used to my horizon being measured in a matter of paces, from one wall to the next. To see it stretch almost to infinity is to realise the dimensions I am meant to live in. The human body and mind were not designed to be encased in darkness, yet, for so many of us, this is our enforced mode of existence.”

“The reminder that there is a world of colour and light and space out there can be a boost to the soul – and also a deep sorrow. Because for each hour I spend outside in sunshine, I have passed a thousand days in great suffering. I have hope of the experience being repeated, but also the knowledge that the darkness can swallow me again at any time.”

Many of us place a strong expectation on ourselves to feel only gratitude for improvement, but the reality is rarely that straightforward.

“The emotional response to seeing beyond the prison cell, and to the improvement in health which allows it, can be complex. Joy and gratitude are usually (though not always) easy to feel. More difficult to process are reactions of grief, anger and fear for the future. This is especially so when close friends remain trapped in unremitting pain, unable to bear even the curtains being opened. Grieving one’s own losses is complicated when balanced with the knowledge that others have it so much worse.”

“For me, it comes down to a simple truth: I can be grateful for what I have regained, but should not force myself to believe that this is as much as can be expected from life. Reaching ahead to a better future is an essential component of being human. As is an emotional landscape that encompasses sorrow alongside pleasure, and everything in between.”

“What is the meaning of Christmas when every moment of it is a struggle to exist? When the very foundations of celebration – food and company, music and light – are so physically destructive as to be impossible? When even the presence of loved ones is too much to bear? When the dreadful isolation of illness is greater than ever, because today, more than any day, the world seems to have forgotten your very existence?”

I went on to say:

“Special occasions for me remain a delicate balancing act. My spirit craves colour and light, but my body demands darkness and silence in order to function. Reconciling these two fundamental needs is a challenge that exists all year round, but which is most keenly felt at times like this.”

“Darkness and light are an intrinsic part of life. At Christmas I am especially aware of both the darkness of suffering and the light of the human spirit.”

I ended by paying tribute to those most severely affected, for whom Christmas is a time of extreme suffering and isolation.

“They fight on through the unendurable, with courage, humour and grace. Their spirit is the very essence of what it means to be human. Without even realising it, they bring light to the world.”

In September and October, I published a three part series analysing the BACME (British Association of CFS/ME) guidelines on severe ME. It was my most demanding writing project this year. The guidelines were released in January but, due to the pace at which I am forced to work, it took most of the year before I was able to complete my analysis.

“The BACME guidelines illustrate a topic of particular importance to me: namely that unhelpful and even damaging treatment doesn’t always come in the form of overt disbelief. Harm can also be caused by professionals who display compassion but who nonetheless have fundamental misconceptions about the illness.”

Writing about the guidelines allowed me to address a number of important issues relating to the treatment – and mistreatment – of those with severe ME.

“Open hostility towards patients and overt references to GET have been removed, at least from publications such as this. (In clinical practice, they remain sadly prevalent.) We now have sympathetic acceptance of symptoms, but still with the same underlying belief: namely that patients can recover, or at least substantially improve, if they repeatedly stretch their boundaries and increase activity.”

“The picture painted by the guidelines is problematic on numerous levels. A professional approach that begins with apparent understanding can easily turn into something forceful when the progress expected is not made. I have worked with many professionals who, when I wasn’t getting better – or not progressing at a rate they deemed appropriate – decided that the only possible explanation was that I lacked motivation and wished to remain ill. This despite me driving myself to collapse trying to meet their demands.”

I wrote extensively on the issue of deconditioning and graded exercise.

“Having progressed from being close to death to the more active place where I am now, I can confidently say that deconditioning and the symptoms of severe ME are very, very different entities.”

“A crucial fact, routinely overlooked, is that deconditioning can only ever be addressed secondary to appropriate management of the underlying illness. Any intervention that worsens the ME will automatically compound the problem of deconditioning. Conversely, creating an environment for the body to heal provides greater chance that deconditioning can eventually be tackled on some level.”

“Trying to create healing through sensory exposure – or any form of activity – is absurd at best, and dangerous at worst. It is akin to believing that because healing a broken leg allows a return to playing sport, a return to playing sport must therefore heal a broken leg.”

“Living with ME is like trying to cross a field submerged by deep flood water – the water being the illness. If the waters recede a little (the body’s own natural healing), the exposed ground will be left boggy (deconditioning). With care and attention it will be possible to traverse this exposed section of ground. At this point, a slow and gradual increase of activity can be of benefit, provided that symptoms are always respected. But – and I cannot stress this enough – one can only go as far as the edge of the remaining flood water: any attempt to walk through that water (the remaining illness) will result in drowning (relapse). The flood water cannot be pushed back through willpower, exercise, positive thinking or increasing activity.”

I ended the series with these words:

“In any other illness it would be considered mandatory for a clinician to have satisfactory medical knowledge of the condition they were treating. At the very least they would be expected to know methods of symptomatic relief, and to be aware of ways in which the condition could be made worse. These should be basic requirements for anyone treating ME, too.”

Thank you again to everyone who has supported me this year by sharing and commenting on my writing. If you would like to receive email alerts for new posts, sign up by clicking the button at the bottom of the page. You can also follow me on Facebook and Twitter.

Images: All photographs on this page by Naomi Whittingham, except for Iceberg by Annie Spratt on Unsplash

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